Montreal's senior monthly since 1986

Feb '10


Respect wishes of cognitively impaired when addressing them

Alzheimer’s and related dementias rob a person of many abilities but should not rob them of being treated with dignity and respect. While some Alzheimer’s behaviours may seem childlike, the disease does not turn adults into children.

We often affectionately greet children as “sweetie,” “cutie pie,” and “my lovely,” but these are not approriate names for adults, no matter what their mental capacity. It is disturbing to hear paid home caregivers and residence staff use such childish endearments for their patients. When introducing a client to the head nurse of a residence, she greeted my client with: “Aren’t you a cutie pie?” My client’s daughter looked horrified and I half expected her to grab her mother and run. The following week I overheard a nurse call her Alzheimer’s patient “lovey.” I was sitting in my doctor’s office patiently, or not so patiently, waiting for my name to be called. “Mrs.” was called in, then “Mr.” and after a few more people had their turn, the physician called out “Bonnie.” I do not have a personal relationship with this doctor but was not offended by his calling me by my first name. I am just not sure why he used my first name while he called the other patients “Mr.” or “Mrs.”

I call him Dr. X and even though I know his first name, it would never occur to me to use it. Could it be that I was the youngest person in the waiting room? Does age give a signal of what to call someone?

I believe that all senior citizens, including those with dementia, should be asked how they would like to be addressed.

Recently I helped move an 85-year-old woman from an autonomous residence to a care facility because of a decline in her cognitive functioning. The care manager respectfully asked her what she would like to be called. She replied “Mrs. White” and went on to explain that in her previous residence, everyone had called her by her first name and she had hated it; she had never been asked for her preference.

Alzheimer’s patients have a full life history that the disease cannot erase. The woman who taught school for 40 years and had her students call her Mrs. X may feel uneasy when caregivers, sometimes as young as her students, call her by her first name without her permission.

Alternatively, others may find comfort in the informal manner of being called by their first names.

Caregivers working in this field should know the life history of those they care for. They should begin their relationship with them by respectfully asking what name they would prefer to be called. It’s all about maintaining respect and dignity.

Questions and comments can be sent to


Adjusting to ambiguous loss a lasting struggle

December, 2009

We feel “ambiguous loss” for people who are physically present but psychologically absent. You might feel this way for someone who is in a coma, or someone who has Alzheimer’s.

They remain family members, but in an altered state; they are no longer the people they once were. Unlike in the case of the death of a loved one, there is no closure and there are no rituals to follow. You, their loved one, are left in a state of confusion, dealing with a physical body and an absent mind. Families dealing with such loss are often overwhelmed.

Because there is no death, there is no opportunity to say goodbye, and support systems often fall by the wayside. Friends and families may be uncomfortable with the situation and unsure how to respond. This results in fragile families who don’t receive much-needed social support. Many of these ambiguous losses last for years and leave families in a state of perpetual grief. Friends and family do not know how to deal with life cycle events. Does one call on the birthday of someone with dementia? What about a couple’s wedding anniversary? The worlds of families dealing with Alzheimer’s begin to shrink, leading to their isolation.

Different family members will respond differently to the introduction of Alzheimer’s into the lives of their loved ones. Some will be in denial, some will feel shame and want to keep the disease a secret, adding greater stress to the family, while others will readily educate themselves and seek support.

In dealing with Alzheimer’s, families have the added burden of the stigma. They are often unwilling to share their intimate stories with those in their social circle, and end up withdrawing from a potential source of support. The person with the disease undergoes traumatic changes that in turn affect each member of their familial and social network.

Reactions to psycho-social loss may include guilt and depression. Anger is a common side effect when dealing with Alzheimer’s in the family. Disappointment with non-supportive friends turns to anger that can be directed at the affected person. Another cause of frustration is the false belief that people with Alzheimer’s have the ability to control their own behaviour. In later stages, caregivers can become exhausted and angry, feeling that they have lost much of their own lives in the years of caring for someone who is emotionally absent.

In the case of a spouse of a person with dementia, the role and definition of “spouse” becomes unclear. How can you be married if your spouse no longer knows your name, no longer recognizes you and can no longer fulfill any of the responsibilities one associates with being a husband or wife? If you find yourself wanting to find companionship with someone else, you may feel confused and guilty. This confusion is likely to spread, as friends may not know how to react to someone who is technically married yet begins a relationship with a new person. Support can be sparse in such a case, as people may be quick to judge you as disloyal since your spouse is still alive.

Support groups can help people in such situations deal with the adjustments they will have to make because of the profound losses presented to them on a daily basis.

Questions and comments can be directed to Bonnie Sandler at


Adjusting to changes improves daily living

Physical abilities decline with age. There can be deficiencies related to hearing, vision, mobility and balance. Thankfully there are aids to assist with these challenges.

Many of my clients, even those in their 90s, stubbornly refuse to admit to these changes and resist using any kind of aids that would improve their daily living. I am not speaking of those with cognitive impairment, but rather of otherwise healthy seniors who are fighting to retain their independence and refuse to acknowledge changes in their functioning.

When I try to converse with someone who is hearing disabled, I invariably ask about hearing aids. I get all kinds of answers including: “I hear just fine and don’t need any hearing aids” or “I tried them and they are bothersome.” (I understand that some people find them disturbing with regard to noise) or “They are expensive and I manage fine without them.”

Spending a couple of hours with a hearing-impaired client who refuses to consider hearing aids results in a sore throat and exhaustion for me. If the interaction is in a public place there is no doubt that others will stare, likely wondering why the person is not wearing a hearing aid. Hearing aids are no longer cumbersome-looking; technology has changed over the years and is quite sophisticated now. A person wearing a hearing aid will go unnoticed, as opposed to hearing-impaired people who think their hearing is okay and have others speaking loudly to them.

Certain medications and illnesses affect balance, as do postural changes in the elderly. Those who suffer from chronic back or leg pain may have difficulty walking, but many still refuse to use a walker or even a cane. Suggesting a walker to some people is akin to using foul language. After all, they tell me, walkers are for old people. What would others think?

Instead, their worlds become smaller because they avoid physical activities that include some degree of walking. When you see someone leaning against a wall as they walk, holding on to someone for dear life, wincing in pain as they walk awkwardly and with difficulty, do they look young and physically able? It is the people who walk confidently with a walker, or even scoot around on their scooters – those who have taken control of their lives – who are not stared at.

Resistance to adjust to the changes in your body as you age will reduce your quality of life. Making those adjustments and using the necessary tools to assist you will allow you to continue your usual activities as well as making it easier for your loved ones to be in your company. Making use of aids will not make you look sick or older. Canes, walkers and hearing aids are not only used by seniors – they help everyone who has difficulty with mobility and hearing. Those who refuse aids, often causing frustration in loved ones, stand out more than those who make healthy choices by adjusting to the changes in their bodies.

Send comments and questions to


Older tenants may need help standing up for their rights

October, 2009

When it comes to dealing with leases, some seniors become susceptible to unscrupulous landlords because they don’t understand their rights.

While an older person may have capacity, the range of capacity is wide. To fully comprehend the responsibilities and obligations of tenants and landlords one must read the detailed lease thoroughly. Some older people may be intimidated by a landlord. Seniors coping with such stresses as physical ailments, a pending move or isolation may agree too quickly to a landlord’s requests rather than checking their rights and negotiating a better agreement.

I recently assisted a 90-year-old man with his move to a senior’s residence. I was hired after he had given his three months’ termination notice to the landlord. Before the three months were up, he found an appropriate residence and moved in quickly, leaving behind the items he was not taking with him. Soon after, we returned to the old apartment with the women who were hired to organize the move and sell the remaining belongings. While we were there, a man and woman paraded into the living area, introduced themselves as co-landlords with the live-in landlord, and began questioning us as to when the apartment would be vacated. We assured them that the apartment would be empty at the end of the notice period. They proceeded to insist the apartment be cleared as soon as possible, claiming that the three-month notice period was for the landlord to prepare the apartment for renting.

They refused my request that they should leave, saying that we had no right to be there while they had every right since it was “their” apartment. Realizing we were at an impasse, I carried through with my threat to phone the police. When the police arrived they were professional and helpful – but not pleased about being called for a minor issue. However, they did clarify the law. The tenant has full rights to the apartment for as long as he paid the rent and landlords have no right to enter the apartment without the tenant’s permission.

My client was in the apartment at the time of the incident and was clearly stressed. To make matters worse, he is hearing-impaired and could not understand what had transpired. The police warned the landlords not to enter the apartment again without the tenant’s permission, stating that if they did, they would be arrested.

Had I not been there, my client, in order to maintain peace, would probably have handed over the keys and forfeited his belongings to the landlord.

Unfortunately, the ordeal did not stop there. My client handed over cash to the landlord when he asked for money to pay Gaz Métropolitain – with no bill or receipt. This was done when I was not present. To ease my client’s anxiety, I had the apartment vacated two weeks prior to the end of the termination notice and had the keys returned to the landlord. The landlord was asked to sign for the receipt of the key, and was asked not to contact my client since each contact caused him to slip into a state of anxiety. The landlord refused to sign the letter.

Had my client not had involvement from an outsider looking out for his best interests, he would have been forced out of his apartment early, would have abided by the landlord’s “rule” that there be only one garage sale – with few people allowed to enter the apartment during the sale – as well as other ludicrous requests. I tried to transfer Hydro over to the landlord, but was told it could take 10 days for the transfer, which could only be done after the key was turned over. It remains to be seen if this story has ended.

With senior residences, the leasing agent goes over the lease with the tenant. Any promises made at the signing should be added to the lease in writing. Yet it is still important to ask questions:

What is the policy in the event of death or the need for a move to a nursing facility? This should be stipulated in the lease. If a resident has a physician’s letter stating he or she is in need of a nursing facility, the law states that only one month’s notice is required.

I urge seniors who are not sure about their rights as tenants to seek assistance from family, friends, the Rental Board or community groups before committing to a new lease or any changes to an existing one.

Comments or questions?


Moderate drinking works when socializing with friends

Articles about preventing dementia are numerous. The most recent one I read was in the Montreal Gazette on August 28, under the headline “Moderate drinking in elderly can ward off dementia: study.” Whether it is drinking pomegranate juice, doing crossword puzzles, or exercising regularly, studies suggest many ways we can ward off Alzheimer’s (AD). As with many diseases, prevention involves exercising body and mind, proper diet, and avoiding excessive alcohol and coffee.

This study suggested that the risk of dementia may be lessened with moderate drinking due to a protective effect of alcohol in reducing inflammation and heart disease, but what concerned me was the social interaction related to drinking.

My worry is with seniors who are socially isolated. As people age, their circle of friends shrinks and it becomes more difficult to keep up with social activities they once enjoyed. Harsh winter weather makes leaving the home more difficult. Physical disabilities such as hearing or vision impairment can make social interaction stressful. Family gatherings may be few if children have moved away.

In short, many seniors spend much of their time alone. This can lead to depression and perhaps cognitive impairment, as suggested by some studies. Alcohol can be a dangerous addition to such a mix.

Some cognitively well individuals insist on remaining in their homes, even when their physical handicaps create a safety risk. These once sociable seniors live lonely lives. Seniors who live alone must make an effort to have a social life, such as joining clubs or taking courses.

For cognitively impaired individuals, living alone presents a whole different dimension. A needs assessment and care plan outlines whether the person can be alone for periods of time. Home care may turn out to be the best option, and hired caregivers can insure the person’s physical needs are looked after. The individual’s social needs should not be overlooked. Social interactions are as important for the cognitively impaired as it is for the cognitively well.

I recall an assessment of a man with AD who lived in the large home where he had lived most of his life with round-the-clock care. He was no longer able to leave the upper storey of his home because of the stairs. He remained there for over two years with no interaction besides his caregiver and family visitors. The television was his only source of entertainment. For the last year of his life, he moved into a nursing home, close to his family, where he enjoyed being among others. His physical needs were better managed because the facility was equipped to make transfers more comfortable.

All assessments and care plans should include studying the person’s social life with recommendations when appropriate to include social interactions.

While moderate drinking may ward off AD for scientific reasons, I know I will drink my martinis with friends. Send comments or questions to


Sharing magical momments of music

July 2009

Music is a unique language, a special form of communication. We appreciate music even when we don’t understand it. Music is a language of the heart; it reaches us in an extraordinary way, unlike other forms of communication.

The first loss we associate with Alzheimer’s Disease is memory loss. Gradually many patients lose the ability to communicate with words. However, it is not unusual to watch people with significant memory loss sing the words to a song familiar to them from their past.

Many residences catering to individuals with dementia use music therapy as a wonderful resource to calm agitated patients.

Particular types of music bring different emotional reactions from each individual. Memories we associate with old familiar songs may take us back to happy, exciting or perhaps sadder times. This is no different for people with dementia. Music therapy enhances their lives.

A simple way to share time with your loved one is to sing old and familiar songs with them. No one will care whether you can carry a tune. It is not unusual to see a group of cognitively impaired people singing the words of old time songs,words lost to their every day speech. Such songs as You Are My Sunshine, or My Bonnie Lies Over the Ocean are familiar tunes heard in recreational centres for people with Alzheimer’s. I remember watching my mother singing Yiddish songs to her sibling, songs that they had sung in their childhood. It was easy to spot the sparkle of recognition in the eyes of her loved one.

Music brings people together and is a wonderful activity to share with someone who no longer communicates easily with words. Try singing with your loved one; buy some CDs with music from the olden days; have music playing in the background as a calming comfort to someone living with confusion.

Bonnie Sandler is a private social worker, specializing in professional services for seniors. If you have questions or comments send them to

Editor's Note

After learning that Bonnie was writing about the effects of music on persons living with memory loss, I wanted to include my stor y about my mother’s 85th birthday and the magic the music created that day.

I had decided to celebrate my mother’s birthday at her small senior residence with the friends with whom she now shares her days. I arrived early with the cake and candles and all the birthday trimmings, including her favourite cocktail appetizers from Snowdon Deli.

After singing Happy Birthday, we cut the cake and continued to sing. The eight residents sang under the leadership of one lady who has a wonderful voice and remembered all the words to my mother’s favourites, in particular Paul Anka and Nat King Cole. I started singing an old Yiddish favourite, Oifen Pripichick, which I had learned from my mother. Her first language was Yiddish. She hummed along, but didn’t seem to remember the words.

One lady, named Goldie, who till that moment had never had a conversation with me, began to sing the words with me as clear as a nightingale. She knew every last one and as soon as we finished, she asked to sing Oifen Pripichick, as if we hadn’t just sung it. The other ladies tried to join in, a feat for them, since none speak Yiddish or knew the song. Goldie just wanted to sing it again and again and soon my mother was remembering the words and the three of us were a choir.

This is how I will always remember Goldie. She died last month and will be dearly missed by all those at the residence who knew and loved her.

— Barbara Moser


Making decisions for a parent is difficult

June 2009

Your parent has received a diagnosis of dementia. After years of concern this should not come as any great surprise. So where do you go from here?

Let’s take a step back. The time to have the “conversation” with your parents about what they would want if they were not able to care for themselves is when they are healthy and before they become cognitively impaired. Let’s also assume that you have a mandate in the event of incapacity. With the “conversation” and the mandate, you are equipped to make the right care decisions.

A diagnosis does not mean immediate change. It is a medical confirmation of what you have probably guessed. It’s possible to stay in our own homes as long as there is no safety risk.

Questions to ask before making drastic changes

• Has your parent ever wandered away from home or got lost?

• Is the person eating properly; has there been any noticeable change in weight?

• Is the house in reasonable order, or is laundry piling up and garbage accumulating?

• Does your parent smoke; have there been any accidents; is there evidence of cigarette burns?

• Are showers being taken regularly?

• Do you feel that your parent could make proper judgment calls if asked for money?

• If there were an emergency would your parent be able to call 911 and explain?

• Are they willing to accept help at home?

• Are there any physical issues; are the stairs in the home a safety risk?

At some point it may become clear that the parent can no longer live alone, even with home care help, and a move begins to seem like the only choice. This is one of the hardest decisions a child will be faced with.

What distinguishes Alzheimer’s Disease (AD) from other illnesses is that logical and intelligent discussions with the parent are no longer possible.

Ideally, all siblings agree on the move and where it will be. Family support is so important. Support groups can also be extremely helpful for adult children as well as for spouses. Children with little support from family or friends can find themselves in a very lonely place. We should all look around our circle of family and friends to see if we should offer a helping hand to anyone who may be in this situation.

An adult child in denial mode who is unable to make decisions as needed can compromise a parent’s safety.

How nice it would be for children if their healthy parents sold that three-story home before they became unable to manage on their own. This applies not only to the cognitively impaired, but also to those who have physical challenges.

Questions and comments can be sent to bonnie@


Changing roles: parenting the parent

May, 2009

I remember when I was in my early 40s reading an article about turning 50. This was described as a time of freedom: Children are established and have moved out of the home, responsibilities are fewer and financial security has been reached. I have since hit the big five-oh, and none of the above apply to me.

Now baby boomers are not only working longer, they may still have children living at home and are often caring for aging parents.

If the parent has a diagnosis of cognitive impairment, adult children find themselves assuming a parental role toward that parent. The shift from adult child to parent is a difficult transition. Even as adults, children often turn to their parents for advice, support and guidance. Children, no matter what age, continue to view parents in the role they have always assumed.

When parents lose their abilities to Alzheimer’s disease, they are no longer able to provide their children with what we view as parental care.

Pre-diagnosis is a difficult time. There are good days and bad days. Children may feel one day that there is something wrong with their parent, but then a good day comes along and they chalk the difficulties up to fatigue or simply an “off day.”

Gradually there are more signs all is not well: The parent has more difficulty covering up early memory losses and confusion. The feeling of being on a roller coaster ride begins, one day filled with worry, followed by a day of relaxation when the parent is fully functional.

As difficult as it is to hear a diagnosis of Alzheimer’s disease, knowing there is a reason for those years of changing and odd behaviour can provide relief.

As a general rule, it takes about four years to establish a diagnosis of AD.

Some adult children get stuck in denial mode, unable to accept their parent’s mental decline. It is one thing to witness an aging parent’s physical challenges, but watching a parent’s confusion over how to use a fork is hard to digest. The child may be unable to believe that their strong, intelligent parent, once seen as a pillar of strength, can no longer eat without direction or assistance.

Feelings of resentment and guilt are added to the many other mixed emotions. Caregiving or care managing takes an enormous amount of time and energy, leaving less time for family, work and pleasure. Already busy lives become impossibly busier. Guilt over not being able to manage all these responsibilities can lead to overburdened, stressed-out adult children who may become anxious or depressed.

If a strained relationship existed before diagnosis, children can feel that their parent is exhibiting difficult behaviours to punish them. In such situations, I often suggest counselling for the adult child, preferably after they have educated themselves about the disease. Relationship issues that have not been resolved prediagnosis will never be able to be addressed directly with the parent, and it can be very helpful to work through these issues with a professional counsellor.

As parents need more assistance with their personal care, it may be best to hire a professional caregiver. Even when the parent has difficulty expressing himself in a coherent manner, there may be signs of discomfort when a daughter assists in such personal activities such as bathing. A paid and experienced caregiver is often more successful in assisting with personal hygiene. Many adult children admit to not feeling comfortable caring for their parent’s personal needs. If this is the case, the parent will surely sense the discomfort and may react unfavourably.

As the disease progresses, children will find that they will need to make more and more decisions on behalf of their parents.

Without proper education about Alzheimer’s disease, children may continue to fight the disease with anger, withdrawal and other responses that agitate their loved one.

It is necessary to understand that Alzheimer’s is a neurological disease that slowly robs people of their mental and physical abilities – through no fault of their own.

Comments and questions can be sent to


Do you have to ask the question?

The first thing I do when I bump in to a family I have worked with is to greet the Alzheimer individual with a handshake, a direct look into their eyes, and introduce myself with “Hi John, I’m Bonnie.” It doesn’t matter if I have met this person many times before, or if our last meeting was hours earlier.

But sometimes the family caregiver will see me approaching and by the time we are face to face she is already asking the loved one if they know who I am. It’s hard not to notice the confused look on the individual’s face as I witness their inability to remember me. Sometimes one or two more questions are asked before I am able to reintroduce myself.

Memory losses associated with Alzheimer’s are irreversible. No special juices or vitamins will bring back the person’s memory. Certain medications may slow the progression of the disease, and physical and cognitive exercises are beneficial, but the losses, both physical and mental, are permanent and sadly progressive.

So why ask the question? Are people testing their loved one’s memory? Are they hoping for the right answer? Do they think the questions will help stir up memory? At times, asking too many questions may agitate the person. They feel that they are expected to know something but can’t find the answer. Well meaning family members may think that they will help the person recover their memory.

Recreologists working with groups of Alzheimer patients will include cognitive exercises such as word puzzles and memory games as part of their program. But people are not singled out and directly asked if they can remember certain things. These professionals know how to give hints and assist those who show signs of agitation. Activities are presented in a playful and non-threatening way. It is interesting to observe these groups when members get excited after they hear the leader give the answer as though they had answered themselves.

So rather than asking your loved one if they know someone’s name, reintroduce the person: “Look John, it’s Bonnie. ” This is a simple way of reducing unnecessary frustration in your loved one.

Questions and comments can be sent to


Working with and not against the need to hide and hoard

March 2009

A common behaviour of individuals with Alzheimer’s is to hide or hoard items. Sometimes there is a history of collecting beautiful or valuable objects, like my Swarovski crystals and mini teapot collections. The problem is that memory impairment prevents the affected person from locating the hidden items. You are fortunate if your loved one has a special hiding place. In this instance, you may be able to find the missing keys. But many times there is no such special place and finding keys, watches, and dentures is a difficult if not impossible task. Trying to find hidden car keys when you are late for an appointment can push an already stressed caregiver over the edge. There are a few ways to help deal with this behaviour. First, declutter your home. There are fewer hiding places and items will be easier to find in a clean, organized home.

Second, hide valuables in a locked drawer. This includes jewellery and documents. Make a second set of keys and keep them in the locked storage place. Dentures and eyeglasses are difficult since they are necessary for daily living. Reading glasses could be bought in dollar stores but full prescription glasses and dentures are costly to replace. Many caregivers have found objects in the garbage, fortunately before they were thrown down the chute. Make a habit of checking garbage bags. Not a fun activity, but it could save you hundreds of dollars if you locate missing dentures.

Just because someone has Alzheimer’s does not mean that they will not enjoy wearing their jewellery as before. But what do you do if her diamond pin, handed down from her mother, is at risk of being lost? Some families have copies made of irreplaceable or valuable jewellery, allowing their loved one to continue wearing familiar and meaningful pieces. Shopping for new costume jewellery can be a fun activity as well as solving the problem of lost valuables.

If your loved one has a special hiding spot it is not necessary to empty it out completely. Take out what you need, but leave some items behind. Your loved one will continue to hide items there, but at least you will know where to look when something goes missing. This hiding and hoarding behaviour is common in nursing facilities. Staff is sensitive to this problem and is on alert to notice objects that may seem out of place. Report what is missing. You may notice your loved one sporting a bright red sweater you recognize as not belonging to them. Perhaps it seems odd to you, since red was not a favoured colour. At the same time you may see another resident clutching the decorative pillow from your family member’s bed. If neither patient is disturbed by this, try not to react negatively. You are dealing with many challenges; let this one go.

One daughter, who saw her mother in a different sweater each time she visited, found humour in the situation. Her mother had always been fashion conscious and her daughter felt that her mother was enjoying finding new clothes to wear. She would tell her mother how lovely she looked in her new sweater and felt comfort seeing the smile on her mother’s face.

Comments and questions can be sent to and may be used in future articles.


Caring for the whole person

We read so much about the isolation and loneliness of the caregiver. Friends tend to disappear, social activities are dropped and the world of the caregiver shrinks. Professionals encourage caregivers to join support groups, a safe place to share difficult experiences. Programs exist to provide respite relief to allow the caregiver to have time outside the smallworld of their home.

But what about the person with Alzheimer’s? Many will argue that home care is the preferred choice and that placement should be avoided if possible. However, in planning to care for a loved one at home, attention must be given to the person’s spiritual, physical, emotional, mental and social needs. Isolation and boredom must be addressed. I see too many people being cared for at home whose physical needs are well attended to but whose other needs are neglected.

Some individuals will sleep more than usual due to the disease, while others oversleep due to boredom. Interests and hobbies of earlier times are no longer appropriate and need to be replaced with meaningful activities. Think about the person’s interests pre-diagnosis: their occupation and hobbies. Incorporate new activities using this information. Someone who handled money may be content to sort coins; a housewife who was often busy doing laundry may find comfort in folding towels. It doesn’t matter whether these tasks are performed well, and activities can be repeated, since the person may not remember them.

I often suggest an activity table. I see beautiful homes in perfect order without anything of interest for the patient. An activity table, with puzzles, large blocks, coins, wool to be rolled, etc., should be on display for easy access. Caregivers may have to deal with having their homes look like day centres, but if a loved one is to stay at home, adaptations become necessary.

Busy caregivers may not have the time or patience to spend one-on-one quality time with their loved ones. Even paid caregivers are kept busy with cooking and cleaning – necessary tasks that take valuable time away from interacting with their client. Physical activity, from simple walking to chair exercises, is vital to keep the body limber. Soft touches like sharing in a game of cards or singing a song together are ways of caring for the “whole” person. Caregiving is an overwhelming job, but keeping up with the activities of daily living is not always enough. Everyone needs to feel meaning and purpose in their day.

If all of this is too much for the caregiver, and it often is, a day centre can be a great solution. Not only does it provide respite for the caregiver, but its trained recreational therapists will also keep your loved one active and stimulated. Day programs provide social interaction not always available at home, where care is often one-on-one. Isolation can lead to depression and apathy.

There are a host of wonderful day programs in Montreal worth looking into. A call to your local CLSC or Alzheimer’s association is a good place to start.

Asking the patient if they want to attend will usually receive a negative reply, so it’s worth presenting the plan in an exciting way, without discussing it too much in advance. Be prepared for some resistance beforehand and take the feedback with a grain of salt. When your loved one reports that they hated their day, did nothing, and didn’t have lunch, get feedback from the group leaders. You’ll likely find that the person participated readily and happily throughout the day.

Comments and questions can be sent to


Making the holiday season joyful for your loved one

The holidays are quickly approaching and reminders are everywhere. Christmas carols can be heard on the radio, and there are lights and decorations every which way you turn. Gift buying suggestions overflow our mailboxes.

Whether you celebrate Christmas or Hanukah, the holidays are times for celebration, family dinner gatherings, and party invitations with the underlining expectation of comfort and happiness. This time is difficult for many. We remember our loved ones who are no longer with us, we worry about having enough money to buy gifts, and some of us crumble knowing our lives are less than perfect during this so called festive time.

We see family and friends who are not well, who are going through hard times, and we look at our own lives questioning our own level of happiness. But what about the caregiver? How will she celebrate the holidays? How will she get through this time with all she has on her plate, living the “36 hour day?” Will she be expected to buy gifts, cook and entertain family and friends?

For the caregiver who struggles to get through each day, I hope that she will be surrounded by loved ones who will recognize her life and respectfully include her in their holiday time if that is what she wants. Some people prefer to ignore the holidays and this should be respected. Well meaning people may pressure others to join them in their festivities and do not hear what is really being said to them. Take the time to listen and to respect the wishes of others.

A precious gift for a caregiver is time. Offer your time to free the caregiver to be able to enjoy activities of her own. If you want to add to this, think of a gift certificate for some body pampering, or for a favorite boutique. Invite her out to a movie and dinner and arrange for someone to stay with her loved one.

Holidays bring memories of past times, better times, and with these memories come sadness. If we are dealing with a sick loved one, we wonder what the new year will bring. Will the loved one be here for the next holiday? It is easy to suggest that we focus on the present, the days of the holiday, and to make the best of this time. The suggestion is easy, the follow through is harder. There are no magical answers.

Someone with Alzheimer’s should not be ignored during the holiday season. Think back to how these times were spent in the past, before the disease. What did the person enjoy about the holiday season? Was it the food, the songs, a decorated tree, the opening of gifts, small or large gatherings? Plan to include your loved one in some of these activities. The treat of a turkey dinner with all the fixings, potato latkes and sugar donuts, a beautifully wrapped gift, some old time music or movie that can be enjoyed by all. Keep in mind that these activities should not be overwhelming, but at a level that the person will feel comfortable.

I see too many AD individuals forgotten during the holiday time. People may think that they won’t really understand a celebration, but this is not true. A special dinner, dressing in pretty clothes, a gift, hearing lovely music, seeing beautiful decorations can all be a joyful experiences.

We tend to think that everyone else’s life is perfect and that it is just ours that is challenged. Intellectually we know that this is not so, but during holiday time we are bombarded with images of happy people enjoying celebrations. No one is ill, no one is alone. Each year we read about how difficult the holidays are for so many people. Decide what works for you and your loved ones. Focus on doing simple things to bring a smile to the face of someone you love.

Do not forget the caregiver; do not forget the Alzheimer individual. Even a person far into the disease can smile and feel joy.

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Before you sign on the dotted line

The decision to move into a residence, either for you or a loved one, is emotionally exhausting. There is relief after your choice has been made, but still more remains to be done – the signing of the lease.

Leases vary from residence to residence. Many will use standard leases with added or separate clauses regarding care, while others will have a customized contract. Generally, a personal care home (or foster home as some choose to call it) is all inclusive without any added costs, other than medication and personal items. There are no extra charges for showers, laundry, food, assistance with dressing, and inhouse entertainment. This should be specified in writing when signing an agreement.

I have clients who encountered difficulty with lease signing since the monthly cost varies according to care level. Should care needs increase, the monthly cost increases. Most large residences do their own evaluation to decide on the hours of care.

This is all fine but timing can be an issue. A family I worked with chose a high-end care facility for their parents. They were obliged to give their landlord 3 months notice in preparation for this move. Since the new residence was not prepared to evaluate their parents 3 months before the move, an exact monthly fee could not be determined.

While the residence felt that the estimate of care was accurate, there were no guarantees. The residence would not sign a lease until after the couple had moved in and an inhouse evaluation of care was done. If the assessment concluded that more care was needed than the original plan, the monthly costs would increase. An added half hour of care a day is approximately $400 a month. The family felt insecure without a signed lease and a definite price, but in the end they were able to sign for the original price, much to their relief.

A more worrisome example is a family who gave the required 3 month notice to cancel their old lease and planned for the move based on an estimate quoted by the residence. When the individual was evaluated just prior to the move, the care level had changed and the monthly cost increased by over a thousand dollars a month.

Many larger residences offer a la carte services. Pay attention to the prices. Although services may not be needed at move-in, they may be needed further down the road. You don't want to have to move a second time because of rising costs. Nursing facilities or special care floors are often all inclusive.

Address the difficult questions. Should more care be needed than the residence is able to provide, find out how much notice is required for a move to another facility (if it's a move to a government nursing home it's one month). What are the monetary obligations in the event of death?

I fail to comprehend why residences continue to charge the full amount when an individual is hospitalized for a long period of time. No services are being provided, no meals are taken, and yet no reduction is given. Shouldn't the person just be charged for the rental of the apartment? Shouldn't this also apply when notice is given and the person is no longer living there? Shouldn't this be the case in the event of death?

When it's time to renew your lease you may be asked for an increase. Check if the increase is just on the rental portion of the apartment and governed by the rental board. Ask all your questions before signing on the dotted line. Have agreements put in writing and don't just rely on a handshake. Residences are bought and sold and personnel often change. Be aware and be prepared, and take someone with you who can help with the negotiation and review the lease for you.

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What is a Mandate and do you need one?

In my assessments of families dealing with Alzheimer’s, I will ask whether there is a mandate. Some families are not clear on what a mandate is and often confuse “mandate” with “power of attorney.”

I explain to the best of my ability and advise people to contact their notary or attorney for further details. But knowing the importance of accurate information, I turned to Joyce Blond Frank, attorney from Elder Aide, who provi­ded me with the following information.

Joyce says it’s important to know that in the Civil Code the mandate is the same as a power of attorney and the Mandate Given in the Event of Incapacity has its own chapter.

A Mandate Given in the Event of Incapacity is a document that is prepared while you are fully capable of making decisions. You can designate someone to provide needed care and protection with regard to health and property, instructing chosen people to carry out your wishes when you are no longer capable of doing so. You can assign one person to handle all these matters, or divide the responsibilities of financial and health care between two people.

If a mandate is not in place, then should the time come when decisions need to be made, and you are deemed incapable of making these decisions, then someone will be named for you. When there is no mandate, the court may decide that you need “protective supervision.”

In this case, if there is nobody to care for you, the Public Curator will become responsible for your assets. The care of the person, except in very rare cases, is left to a relative, friend, or the facility where the person resides. To avoid this, it is best to have a mandate and choose the person or people you trust to carry out your wishes.

Joyce goes on to explain that the Mandate Given in the Event of Incapacity should not be confused with a will, which takes effect only after death, nor should it be confused with a power of attorney, which allows someone to act for us in activities that we may be perfectly able to do on our own, such as banking.

A mandate can only take effect after a representative of the court decides you are no longer able to care for yourself or manage your own affairs. This is called the homologation of a mandate. The judge or clerk will study reports of both a physician and a social worker’s psycho-social evaluation before arriving at a decision, and may also listen to what you have to say. This means that as long as you are capable, your mandate will not be put into place.

I am often called upon to provide these psycho-social reports for the homologation of a mandate. At times the situation is urgent and the lawyer will take the proper steps to speed up the process. In general, the homologation of a mandate could take a few months.

In order to protect yourself for a possible time when you are not able to protect yourself, a mandate is strongly advisable. I have a mandate and encourage my family and friends to do the same. My daughter often reminds me that should I become incapacitated she will be making the decisions regarding my care. It is a gentle reminder, or not so gentle depending on the day, that I had better be nice to her. As the bumper sticker that I often see on cars reads: “Be nice to your children, they will be choosing your nursing home.”

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Sharing secret thoughts

Alzheimer's Disease is a long journey taking a family through many stages as the disease progresses. Each stage brings different reactions and emotions.

The early stage is difficult on families because the AD individual is aware of the changes they are going through: memory loss, confusion and difficulty performing familiar tasks. The person may become depressed as they recognize these changes and losses, over which they have no control. They are often treated with antidepressants.

Still struggling with the diagnosis, families are relieved to know why their loved one's behavior has changed. They are also confused because there are many good days with no symptoms.

In the later stages, the family witnesses their loved one's inability to manage their own care. They no longer recognize faces – they have a blank look in their eyes that makes us wonder how much of the person we knew is still there.

My friend would visit his mother once a week in the nursing facility where she lived for several years. She had been an accomplished professional and a strong maternal force. My friend spoke to me of being emotionally wiped out by these visits. He no longer recognized the bedridden woman as his mother and had mourned her for years. She no longer recognized him either. When she died, he felt a mixed bag of emotions – relief, and guilt at feeling relief. At the funeral, he told me that her death had been a blessing.

Family members ask what they would want for themselves if they were in this position. They remember their family members as independent and strong people and feel that they would never want to be dependent on others for all their needs.

One important purpose of a support group is being able to share thoughts with others who will nod in understanding and not sit in judgment. It is a safe place to share feelings of anger, frustration, sadness and grief.

Some of these thoughts would be viewed by mainstream society as taboo. But nothing is taboo among people going through similar experiences and feelings.


Take advantage of our short summer

It’s not a coincidence that requests for my social work services decrease in the summer months and increase dramatically come fall. As we all know, life in Montreal includes remarkable seasonal changes.

We naturally spend more time outdoors when the weather is warm. Leaving home requires less preparation, and walking outside doesn’t mean struggling with snow, ice and the fear of falling. Walking not only provides a source of exercise but is therapeutic since it is known to decrease agitation. The caregiver is well advised to take advantage of our short summers while they last, but it’s best to avoid large crowds and noisy events. I would think twice, for instance, about attending a fireworks exhibition. Consider activities that your loved one enjoyed in the past — picnics, park outings, drives to the countryside, small outdoor musical concerts, short cruises and even visits to a driving range for those who played golf.

Attention to particular behaviours of the individual should be addressed. For example, sit where the possibility of an early departure would be the least disruptive. Don’t forget sunscreen, a sunhat and water. Avoid especially hot temperatures that could cause discomfort and dehydration.

Don’t be surprised if your loved one insists on wearing a sweater even in high temperatures. Some AD individuals dislike air conditioning and overdress to stay warm. It can be difficult for the caregiver who feels the need for air conditioning yet must keep it off to please their loved one.

Sundowning is a behavior of many affected by AD. It occurs in the late afternoon or early evening hours as the sun sets and darkness appears. Agitation and anxiety increase, making these few hours especially trying. Some professionals have compared Sundowning to Seasonal Affective Disorder (SAD), when depression occurs due to fewer daylight hours. Keeping the home bright during this time can help.

The words of the song by Gershwin are summertime and the living is easy… I don’t promise easy, but I do think life, for both the caregiver and the AD individual, is easier with summer weather.

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To drive or not to drive

All too often when I ask families about their loved one’s driving abilities after a diagnosis of Alzheimer’s, I’m told there’s no serious concern. After further questioning it’s not unusual to learn the individual is “only” driving close to home (where accidents never happen?) – or only lost their way a couple of times, or scratched the car in the garage. Yet when I ask whether they would allow their children to be in the car, the answer is a firm no.

Who is protecting the neighbours’ children? I’m not insensitive to the significance of driving to someone who has been driving most of his or her life. Having car keys taken away can be devastating. But driving demands good judgment, skills, reflexes, concentration, and sensory abilities.

The burden of this decision should not be left to family members. In California, physicians must report a diagnosis of Alzheimer’s to the health department, who in turn passes this information to the motor vehicle bureau. The Quality Standard Subcommittee of the American Academy of Neurology recommends driving tests be conducted every six months for those with AD.

Why don’t we have a similar process in place here? I suggest that doctors be obligated to report a diagnosis of cognitive impairment to the SAAQ, who should mandate frequent driving tests. This would relieve the family of having to decide where to draw the line. Caregivers have enough on their plates without having to play the enforcer in this respect.

In the meantime, these signs should help families know when it’s time to schedule a driving test:

  • Driving too slow or too fast
  • Unable to find the way to a familiar place
  • Slow in reacting to a new situation
  • Not observing traffic signs
  • Hitting curbs
  • Agitation when behind the wheel
  • Confusing the gas and the brake pedal
  • Scratches on the car
  • Trips taking longer than usual

Above all, safety is not negotiable!

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Enjoy the moment: embrace the experience

Caregivers tell me about shared laughter and special moments with the person they’re caring for. But most articles emphasize the stress related to caregiving. What about the tears of laughter and warm loving times?

Caregivers will be more likely to find these special times if they learn to balance their lives, are members of support groups and are able to ask for help. Overworked and exhausted caregivers who insist on doing everything themselves will be less likely to experience these times. How sad. Stress robs us of our ability to be clear-headed and make smart choices.

The spouse who feels committed to care for their loved one without any outside help, whether it be out of love, loyalty or obligation, will often end up burnt out and unable to enjoy special moments. They have the least to offer their loved ones with regard to quality of life. They tend to the necessary tasks, but they deplete their energy by not enlisting help. This leaves them with little if anything to offer in terms of love, kindness, understanding, and warmth.

I have met many cognitively-impaired individuals who have a great sense of humour and interesting stories to share. They communicate through touch and facial expressions, beautiful music and art. Although Alzheimer’s robs the person of many of their abilities, their essence is still present.

The individual may respond inappropriately to situations, but a good caregiver may be able to find a way to make the most of an awkward experience. Alzheimer’s is a long and difficult journey and different stages will bring different behaviours.

A friend told me that her mother now enjoys singing old crooner tunes with her and eating ice cream cones – experiences they haven’t shared in years. Yet clothes shopping, which they used to love, has become a bore. As a caregiver you need to be flexible enough to adapt to new experiences.

Those of us with most of our cognitive abilities intact find living in the moment a difficult if not impossible task. But a person with Alzheimer’s lives mostly in the moment – their memory impairment prevents them from remembering yesterday, and tomorrow doesn’t exist for them. How many of us are able to do this? If there’s no concern about what others think about us, that’s truly living in the moment.

Someone with Alzheimer’s may start singing or dancing in the middle of the street while people stare. This is a joyful time for them. The question is whether the caregiver can join in or try to stop the behaviour out of embarrassment. A good moment shared is a joyful time. Allow yourself to enter the moment. Remember who the person you are caring for was before the illness and get to know the person he or she is now.

Tips for finding joy in caregiving:

  • Don’t do it all by yourself
  • Find time for yourself
  • Continue with activities you’ve always enjoyed
  • Join a support group
  • Educate yourself
  • Don’t fight the disease
  • Forget the shame, go past it
  • Do not allow others, ignorant of your journey, to judge or advise
  • Surround yourself with people who care about you and understand your situation

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Worrying about the glass of wine

In my assessments of individuals with cognitive impairment, I have noticed that many include a history of lifelong struggles with excessive worrying, anxiety, obsessive-compulsive disorder, and/or depression. This alone is something to worry about. Children of affected parents are concerned about their own future as it is, and now we have more to worry about as we try not to worry, knowing that excessive worrying could be a factor in this disease.

People who have experienced clinical depression are 2.5 times more likely to develop Alzheimer’s, according to a study published this April in Neurology, the journal of the American Academy of Neurology. If depression occurs before age 60, the likelihood increases nearly 4 times. There are several theories as to why this may be, and further studies are expected to explore the relationship between depression and Alzheimer’s.

Recent headlines warned women that drinking a glass of red wine daily might raise their risk of breast cancer. Should we worry? I was happier when I read that there may be constituents in wine that protect against dementia. More confusion. Are we to choose which disease we would most like to prevent? Are these studies causing us more anxiety, therefore putting us at greater risk for Alzheimer’s? Dr. Nathan Hermann, head of geriatric psychiatry at Sunnybrook Health Sciences Centre in Toronto, cautions that this is only "one of a number of studies" that have examined the issue and that "the literature is very divided on whether depression predisposes to dementia or not, and is seriously flawed methodologically, and there are no firm conclusions that can be made." So he's not stressed about it, but how do the rest of us know when to worry? Short of digging into the entire body of peer-reviewed research ourselves, the best antidote to this kind of news might just be a good Merlot.

We all need to find ways to relax, but it is especially important if we are caregivers living the 36-Hour Day (like the book of the same name). What works for one person may not be the right stress buster for another. I like to relax after a hectic day by having a glass of red wine. I rationalize that it’s good for my health. A hot bubble bath surrounded by candles also works. But does the glass of wine enhance my risk of breast cancer, or prevent dementia and heart disease? Will I worry now about having this glass of wine? Will the worry affect my cognitive functioning as I age? Will I have the opportunity to age if I have the wine?

Tonight, after a stressful day, I plan on having a glass of red wine and treating myself to a long hot bubble bath. I won’t allow myself to worry. I will simply enjoy my personal choice of de-stressing.

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Caregiving with dignity

Language for children should not be used for adults, regardless of any cognitive deficiency. Adults with care needs should be treated with dignity at all times. This includes the use of proper language:

  • Diapers – this is a word used to describe a product designed for infants and children who are not yet toilet trained. I cringe when I hear this word used around older adults. When dealing with individuals with incontinence issues we should not use the word diapers. Protective underwear, added under garments are just some examples of terms that are dignified and respectful.
  • Babysitters – are sitters for babies. This term should not be used for adults who are unable to be alone. Using words like companions or caregivers is preferable.
  • Activities – toys are for children. Although there are toys for adults it would be best to refer to these by their specific names ex: puzzle and not toy.

Bathing is another area where we have to be sensitive to a person’s dignity. Many individuals who require assistance with bathing and or dressing are uncomfortable being naked in front of another person. There are ways to keep a person’s body covered while providing the needed care. If the individual is feeling uncomfortable they may become agitated and thus combative. Using specialized clothing that covers parts of the person yet allows for full bathing/showering will calm the person and preserve his dignity. Even properly placed towels can be used.

Celebrations – Birthdays, anniversaries and special occasions need not be ignored because your loved one is no longer able to remember these special dates. Families can continue to honor these times with cakes and goodies and specially chosen gifts for their loved one. Comfortable slippers, a warm shawl or wrap, costume jewelry, or an activity appropriate to that individual are just some ideas. A CD with old time familiar music, a DVD of old sitcoms such as ‘I Love Lucy’ or special musicals can be enjoyed by all.

These are just a couple of tips for preserving your loved one’s dignity and honouring them with celebrations of special dates. As a caregiver you will discover different ways you can adapt your caregiving to ensure the dignity of your loved one.

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